Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.
Linda NguyenKinga PozniakSonya StrohmJessica HavensClaire Dawe-McCordDonna ThomsonConnie PuttermanDana ArafehBarb GaluppiAlicia Via-Dufresne LeyShelley DoucetKhush AmariaAdrienne H KovacsAriane MarelliRonen RozenblumJan Willem Gorternull nullPublished in: Research involvement and engagement (2024)
We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.
Keyphrases
- young adults
- social media
- mental health
- physical activity
- systematic review
- childhood cancer
- multiple sclerosis
- health information
- white matter
- resting state
- quality improvement
- clinical practice
- cerebral ischemia
- healthcare
- hiv testing
- men who have sex with men
- functional connectivity
- hepatitis c virus
- human immunodeficiency virus